Since I missed yesterday (plus many more days!), Happy 5th!
I have always love the 4th of July. When I was a kid, my entire extended family would all get together for a huge cookout, then they would set off crazy fireworks (and then the police would show up).
At this point, I'm still with family, but a much smaller group. My parents, brother and his girlfriend and my boyfriend. My parents rent a place at the beach we always went to when I was little... where my grandparents rented before that. Hard to not be in the sun this year, but I'm away, so I guess that's all that matters.
Last night after sunset, we headed past the few houses between us and the beach. It was high tide, so everything was up close this year. There were so many people on the beach! Near us, I think there were about 5 or 6 different groups setting off fireworks and really good ones too. The weather was perfect on the beach, with such a great breeze. People were cheering and clapping after each good grouping. It was just really nice.
Overall this week has been good. I had a few meltdowns, but much less than I had expected. Driving the 70 miles each way to get radiation treatments four days wasn't fun at all. Today I was up at 5am, out the door just after 6, in the Dunkin drive-thru then on the highway at 6:20. We got there around 7:25.
After my treatment, we stopped for gas then went home to feed and check on the cats, who are doing great. Then back on the road. We were down here just after 9:30 this morning. That's a long couple of hours! And I did that 4 times this week.
Last Friday morning I got an oil change. I looked at my mileage when we were at the gas station, which is just around the corner from where I got the oil change done. In 7 days I put 860 miles exactly on my car! WOW! And that was before getting home and driving back down here. It takes me over 4 months to drive 3000 miles. In the past week I almost did 1000!
Today when we got back, I took a nap for an hour or so. It was nice yesterday, when I didn't have radiation, and I could sleep until 9am. I missed that. I felt SO much better yesterday getting sleep. Wednesday I was a cranky bitch! 3 days in a row of being up at 5am, doing that back and forth ride, not sleeping well at night and not being able to take any naps with people coming in and out of the cottage slamming the door the whole time. It hit me hard by Wednesday (that was the day of 2 of the meltdowns. BIG meltdowns.)
Jim is hanging out watching a movie on his laptop. I woke up about an hour ago and I've been clearing out emails. I haven't really spent much time online this week... almost no facebook for me and I have no life! That's all I seem to do.
Wednesday afternoon we were at the beach for about 2 hours. I applied spf 50 to my body and 100+ to my face and head about 20 minutes before we went to the beach. I sat under an umbrella, faced away from the sun, reapplied my sunscreen and STILL ended up with some color on my chest. Jim put sunscreen on, spf 50, but never reapplied and sat facing the sun. Two days later, his chest is still pink. Poor guy. But he hasn't been complaining about it at all.
My hair is growing back much faster than I had expected. I'm glad I buzzed off the peach fuzz and now it is all growing in evenly. Of course my eyebrows are falling out more and more each day. That just seems like a cruel joke! Just as the hair on my head is growing, I lose my eyebrows and look worse. But I have gotten better at penciling them in. Jim said he wouldn't even be able to tell (and can only tell when I show him with only one eye done) When we compare them, one penciled and one not, the difference is crazy! Maybe I'll remember to snap a picture at some point to share... hair growing, one eyebrow done, one not. LOL! What a look!
This week has been hard in some ways through. Staying with my parents and brother... all the old issues come up. Toss in cancer and fatigue and me still being an emotional mess. I'm actually surprised I haven't had more meltdowns this week. I think that is because of Jim. He's just good at calming me down and helping me when I get to that point where I'm just done.
It is hard thinking about the future. I don't know what's next. I don't know who will be in my life when this is done. What will I be like when this is done? And will it ever really be done? I don't think so. It will always be in my life. It will always be part of me going forward. Every little thing that happens, is it related to my treatments? Or is it something new? But still a part of a cancer thing?
Just having this week to look back isn't easy. I was here over forth of July last year. This wasn't my life then. I was running and exercising ALL the time. I had my long hair pulled back under a hat. I was thin and had energy. I felt like I had so many friends. So much has changed in a year.
The thing I hate the most is the uncertainty about life in general... everything. All my questions... the what's next and who and all that. I'm unsure about everything. I don't know what my life will look like in 3 months, forget about having a 5 year plan!
I'm so insecure about everything, fearful about so many things. I am better at facing my fears with physical things.... Stand Up Paddle Boarding, Trapeze School, things like that. Physically, sure, throw my body into whatever and I'll figure it out and manage or not manage, but try my best.
But with the emotional side of things? Nope! I have such a hard time facing the unknown and facing my fears and forging ahead when it comes to that. I talk myself out of it, let the fears take hold and swirl in spirals in my head, round and round, growing and growing with each spin.
Will Jim and I survive this? Will him and I still be together come fall when I am done with treatment? Or am I only still living with him because I am still going through cancer treatments and he's too nice to do something like that?
What about friends? I am SO grateful for the friends who have been there for me, and who have stuck by me during this. I know it hasn't been easy and I know that I've been all over the place (try living with it, but not being able to change it at the time! Even WORSE!)
The "old" friends who I have reconnected with, what will happen when my drama is over and I'm done with treatments and my life goes on? How will that impact those friendships? And the friends who never left or the ones that got stronger this year? Will they stay like this?
What about the people who drifted off? Who I don't see or hear from much or ever anymore? Will they come back around after this? Will I want them to? How would I react to see or hear from people who aren't there now?
And working out? I haven't done that in months! Will I have the strength to do that again? Will I want to do that again? Will I lose this weight and not feel like a fat slob? How long will it take to feel like I look even just okay again? Instead of feeling like I look like a bald fat scarred freak? Will I ever have self confidence or self esteem again?
2013 has been tough and we are only half way through it. What is the rest of the year going to be like? Will I ever stop being afraid? Will I ever have trust in life, people or anything again?
This week I've been in my head more than usual. I'm tired all the time and frustrated that it is too much to even take a walk down the beach. I have been thinking about what I might want my life to look like in the future and I just don't know anymore. And that's what scares me the most. I am even afraid to think about what my future looks like. I don't know if I am going to like what I see.
Friday, July 5, 2013
Tuesday, June 25, 2013
Fatigue
Yes, it has been a since I have last written. The fatigue I have been experiencing has been so overwhelming. The only reason I am writing now is because my new Kindle that Jim won has Swype typing on it. Right now I am laying in bed. It it's almost 11:30am.
Radiation started a week ago yesterday Even before that I has realized that being out for 2-3 hours, a couple if days in a row is too much for me. I would get home and nap. Now I do that every day. After sleeping 11 hours Sunday night, I had radiation yesterday then met with my friend Lauren, the photographer,to do more pictures. I was out of the house, door to door, for under 5 hours. I came home and took a two hour nap! I was exhausted and all I did was sit around.
I haven't had the energy to do much of anything lately. That has been so frustrating. I haven't exercised, haven't taken Rocco for a walk, haven't really done much of anything in weeks. I miss having energy for anything, for life. That has been really hard on me.
Even more recently, during chemo but before the fatigue was THIS bad, I have had friends say things about how I plan different things for us and if it wasn't for me planning, then things wouldn't happen. Now I am sleeping too much to plan anything. That sucks.
I am so grateful for my friend Debbie from work. She plans when we meet for lunch every week or two. Hound isn't the right word, but she makes sure it happens.
My friend Melissa is the same way. We typically get together every 2-3 weeks purely because of her persistence in planning. I appreciate it so much. I always have a great time when we get together. It wouldn't happen if it wasn't for Melissa.
Other than Jim and doctors, I see Debbie and Melissa more than anyone else. I don't have the energy to plan anymore. I know people are busy, but it's hard feeling left out if things I was once a part of or seeing things friends do from Facebook, that I am no longer included in.
I felt for a while that there were some friendships I have been chasing down. I don't have the energy or desire to chase anyone anymore. My phone number hasn't changed. My email hasn't changed. My address hasn't changed. If anyone wanted to connect or connect with me, that person would know how.
There have been people I have thought about, friends who I would love to see again or talk to, but it has gotten depressing when the only contact is as response, nothing more. The more fatigued I am, the harder it is for me to reach out. This is when I need the contact more and more, but I have gotten it less and less.
Sometimes I think about running away. Once I'm done with treatment, just running away, starting completely over. Making fresh start and a new life somewhere new with new people and new everything.
I'm tired of being tired. This level of fatigue isn't something more sleep or rest will fix. This is chemo fatigue that can and most likely last another few months or even longer. This is my life now.
I am so so grateful for everyone who has been there for me. More than words can say. I guess it's sad that the loss of people in my life, especially from those who I thought would be here the most, is something very common. All the cancer forums I am on, that's a common theme, the MIA friends and lost friendships.
I guess some people just handle cancer. Some people can't handle the emotional roller coaster cancer brings. Some people are "good times" friends but don't want in when the going gets too tough. Some people might think it's too much work or effort to to someone who right now has so little to give back. Some people might not be strong enough to deal with the reality that she could be the next one with cancer.
I don't know the reasons for the MIA friends. I just know how grateful that I am for the friends who have stuck around and who have put in the effort.
There are no words to express how much you, your support, your effort, persistence, and your friendship mean to me.
Thank you.
Radiation started a week ago yesterday Even before that I has realized that being out for 2-3 hours, a couple if days in a row is too much for me. I would get home and nap. Now I do that every day. After sleeping 11 hours Sunday night, I had radiation yesterday then met with my friend Lauren, the photographer,to do more pictures. I was out of the house, door to door, for under 5 hours. I came home and took a two hour nap! I was exhausted and all I did was sit around.
I haven't had the energy to do much of anything lately. That has been so frustrating. I haven't exercised, haven't taken Rocco for a walk, haven't really done much of anything in weeks. I miss having energy for anything, for life. That has been really hard on me.
Even more recently, during chemo but before the fatigue was THIS bad, I have had friends say things about how I plan different things for us and if it wasn't for me planning, then things wouldn't happen. Now I am sleeping too much to plan anything. That sucks.
I am so grateful for my friend Debbie from work. She plans when we meet for lunch every week or two. Hound isn't the right word, but she makes sure it happens.
My friend Melissa is the same way. We typically get together every 2-3 weeks purely because of her persistence in planning. I appreciate it so much. I always have a great time when we get together. It wouldn't happen if it wasn't for Melissa.
Other than Jim and doctors, I see Debbie and Melissa more than anyone else. I don't have the energy to plan anymore. I know people are busy, but it's hard feeling left out if things I was once a part of or seeing things friends do from Facebook, that I am no longer included in.
I felt for a while that there were some friendships I have been chasing down. I don't have the energy or desire to chase anyone anymore. My phone number hasn't changed. My email hasn't changed. My address hasn't changed. If anyone wanted to connect or connect with me, that person would know how.
There have been people I have thought about, friends who I would love to see again or talk to, but it has gotten depressing when the only contact is as response, nothing more. The more fatigued I am, the harder it is for me to reach out. This is when I need the contact more and more, but I have gotten it less and less.
Sometimes I think about running away. Once I'm done with treatment, just running away, starting completely over. Making fresh start and a new life somewhere new with new people and new everything.
I'm tired of being tired. This level of fatigue isn't something more sleep or rest will fix. This is chemo fatigue that can and most likely last another few months or even longer. This is my life now.
I am so so grateful for everyone who has been there for me. More than words can say. I guess it's sad that the loss of people in my life, especially from those who I thought would be here the most, is something very common. All the cancer forums I am on, that's a common theme, the MIA friends and lost friendships.
I guess some people just handle cancer. Some people can't handle the emotional roller coaster cancer brings. Some people are "good times" friends but don't want in when the going gets too tough. Some people might think it's too much work or effort to to someone who right now has so little to give back. Some people might not be strong enough to deal with the reality that she could be the next one with cancer.
I don't know the reasons for the MIA friends. I just know how grateful that I am for the friends who have stuck around and who have put in the effort.
There are no words to express how much you, your support, your effort, persistence, and your friendship mean to me.
Thank you.
Thursday, June 6, 2013
The End is in Sight (but another beginning?)
This week has been better than the meltdown I had on Saturday. I'm still trying to adjust to my new normal, even with treatment starting up again soon. It can be overwhelming at times thinking about it all and processing it all.
Monday I had my appointment with the radiation oncologist. She is so down to earth and I really like her. It was still a bit challenging for me to get through the day. Jim met me for the appointment and was there while I met with the doctor to go over everything. She reviewed the risks and side effects of radiation with me and how it will work.
After meeting with her, I went in for another scan. They needed to line me up to the machine and see how things will need to be lined up for all of the 28 treatments. Margo who walked me through it all was great, almost TOO chipper even. Think Katie Couric kind of chipper. But I guess that's a good thing. Her job is getting people who have cancer set up for radiation. So yeah, it fits.
I didn't know how the scan would go and once I was on the table laying down, I couldn't tell what the scan machine was like. She had me go back and forth real quick so I could see out the other side. Not like an MRI so that was okay, but it still got my anxiety up a little.
After the scans, which Margo did try to help me with any anxiety, she had to tattoo me. :( I haven't been looking forward to that part. But they are smaller than I had expected. Four little dots that really do look like freckles. When I showed Jim that night, he said he would have just thought they were freckles if I didn't tell him. The thing is though, I know that they aren't freckles and they will be on my body forever now, unless I get them removed.
My radiation oncologist wanted me to have 50-70cc's of saline removed from my left breast to not cause any skin damage to that side as the radiation is projected over from my left to right. On Tuesday I had my appointment with my plastic surgeon for the final adjustments before radiation begins.
After going through radiation, I will have skin damage and burns. My skin will no longer stretch if any size adjustments need to be made before I swap my expanders out for implants. All the size changes need to be done now, before radiation. And per my radiation oncologist, NO changes are allowed at this point forward until radiation is done.
At my last appointment a month ago, my plastic surgeon put in 60 cc's on my right side only. I was already uncomfortable being lopsided then. Now? After seeing her on Tuesday? She wanted to make sure my right side was good to go and stretched, so she added another 40 cc's to that side. BUT per my radiation oncologist, she had to remove (aka "deflate") my left side by 50-70cc's. She took out 50 on my left.
Now, my left is 150 cc's smaller than my right. It is a HUGE difference! It is going to be hard to adjust to. I am going to have to figure something out for when I'm wearing a bathing suit! :( Not happy with that. I was already insecure enough without now having VERY lopsided boobs.
After my appointment with the plastic surgeon on Tuesday, I headed back to see Margo and have one more scan. They needed to make sure the changes the plastic surgeon made will have me lined up and good to go when radiation starts. As far as I know, things are good. At least I haven't gotten any calls yet telling me otherwise.
A week from Friday, on the 14th, I head back to radiation. They will do a final set up and have me in the machine for a bit, getting me lined up and all that. They will set the radiation machine to be ready for my treatments. The treatments start on Monday, June 17th.
Before I left on Monday, they printed out my schedule for me. I have every single treatment printed out. Almost all of them are at 1pm. A couple are at 12:45. Then the week I am on vacation down the cape (still need radiation!) Monday, Tuesday and Wednesday my appointments are at 7:45. Thursday they are closed. Friday my appointment is at 7:30. I'll have to leave the Cape, give myself about 90 minutes to get there, where I will be for about 20 minutes or so, then another under 90 minutes to get back to the Cape. But doing that, I should be back at the cottage each day around 9:30am.
It kind of works out a little bit too. I'll need someone to feed the cats for me while I'm gone. If I'm coming home almost every morning, that is 4 other times I won't need anyone to feed them for me. I will just need someone to feed them every night, Sunday-Saturday, then on Thursday and Saturday mornings. I don't know yet who I can ask to do that for me, someone local. I have to ask Jim about it too, before I give a house key out. But then, by stopping at the house to feed them those 4 mornings, I will have to give myself another 45 minutes when I leave the Cape to get to the house, feed them, then the 15-20 minute drive back to Dana Farber.
Jim has needed my car yesterday and today, so I haven't been able to go anywhere. I did get out and take Rocco for a walk yesterday and I'm hoping I have the energy to do it again today.
I still have so much on mind about finishing treatment, where I go from here with my career and any other changes I want to make with my life. Also, I need to think about what I want to do for preventative measures for ovarian cancer as well. I need to start looking up all of that and that scares me.
Next week I am going to an event in Boston with BrightPink.org. It is about women under 40 who are at high risk for breast and ovarian cancers. I started thinking about the BRCA-2 mutation that I have. I can't say for sure what part of my family it came from, but it is somewhere on my dad's side, since my mom was negative for it.
Then I started thinking about the cancer family tree I had to do when I was tested for the BRCA gene. Although none of my dad's cousin's have tested positive for the BRCA mutation, I am fairly positive it came from my grandmother's side.
A cousin who was tested for the gene over 10 years ago (tested negative), did this tree, which is what I used. It goes back 3 generations, which is what I was supposed to do, but 3 generations for her was 4 for me. So my great-great-grandmother, Rose, who died of breast cancer. She was married 3 times, my great-great-grandfather was the third, and my great grandmother was one of her last children. With all of the children she had from each husband she had 11 kids. Two of her daughters had breast cancer. From Rose's grandchildren (outside of my great-grandmother side), she had a grandson with cancer and 3 granddaughters with breast cancer. One was in her 50's, another was 38 when she died. My age. Rose's 3rd husband, my great-great-grandfather, also died of bowel cancer.
Then it's to my great-grandmother, Lucy, who I remember well. My Nana Lucy! I was her oldest great-grandchild, her #1. :) Her husband, Paul, my great-grandfather, had cancer as well, stomach or bowel cancer. They had 7 kids, including my grandmother, Mary. One I'm not sure of, I can't even remember her name. She left the family long before I was born. I don't know if my dad ever met her.
So, with my grandmother and her 5 other brother's and sister's, Paul was killed when he was young, at 9 years old. One of her sisters had breast cancer and 2 of her daughters had breast cancer in their late 40's (although one tested negative for the gene). One brother had bladder cancer. Another brother died of prostate cancer at 47. His daughter died of ovarian cancer at 40. That's 2 years older than me.
My cousin Louise was 2 years older than me. Two! When she died of ovarian cancer, what they call "the silent killer". My the time there are symptoms, it can be too late. She died when she was 2 years older than me.
I remember going to visit Louise when she was sick. I remember going upstairs to her bedroom and visiting with her as she was laying in bed and so tired. I remember he funeral mass as well. I was 14 years old. When we walked into the funeral home, I was sobbing. Her sisters were comforting me. Even at 14, I remember feeling bad about that. They lost a sister and they were comforting me.
I remember that Louise knew it was coming. She made ALL the plans for her funeral, from the music and readings that were done at mass, to the location and food served after the mass. That was Louise, making it easier on everyone else.
During her funeral mass, there is one thing I remember so clearly in the church. I remember looking around and seeing a mailman at the mass, in his uniform. I don't know if he was her mailman or a friend or what, but in my 14 year old mind, I remember thinking, "she was such a great person, even her mailman came to her funeral."
Louise was 2 years older that me when she died. This one thought has been in my head for weeks. I know I need to do something. I want to schedule an appointment with a gynecological oncologist and get the ball rolling on that for my options. I'm scared about it. I don't want to have to go through any cancer again. And if I do nothing, I probably will have to. Next time I might not be so lucky.
So the end is in sight for me with my breast cancer treatment. July 25th is my last day of treatment! YAY! Almost there. Oh one thing I forgot, I have an appointment with my plastic surgeon on July 26th, so she can add more saline to my left side the day after I'm done with radiation so I can be more even as soon as possible!
I'm looking forward to being done with this part soon. I'm hoping the fatigue starts to subside soon (still at 10-12 hours a day of sleep not to mention the HOURS I don't move on the sofa). The side effects have been difficult to manage and its discouraging to not see any changes right now.
But I'll have another beginning with what I do about my ovaries to minimize as much as possible the chance for ovarian cancer. I never want to have to go through this again, so whatever I can do to make that happen, I'll have to do.
Monday I had my appointment with the radiation oncologist. She is so down to earth and I really like her. It was still a bit challenging for me to get through the day. Jim met me for the appointment and was there while I met with the doctor to go over everything. She reviewed the risks and side effects of radiation with me and how it will work.
After meeting with her, I went in for another scan. They needed to line me up to the machine and see how things will need to be lined up for all of the 28 treatments. Margo who walked me through it all was great, almost TOO chipper even. Think Katie Couric kind of chipper. But I guess that's a good thing. Her job is getting people who have cancer set up for radiation. So yeah, it fits.
I didn't know how the scan would go and once I was on the table laying down, I couldn't tell what the scan machine was like. She had me go back and forth real quick so I could see out the other side. Not like an MRI so that was okay, but it still got my anxiety up a little.
After the scans, which Margo did try to help me with any anxiety, she had to tattoo me. :( I haven't been looking forward to that part. But they are smaller than I had expected. Four little dots that really do look like freckles. When I showed Jim that night, he said he would have just thought they were freckles if I didn't tell him. The thing is though, I know that they aren't freckles and they will be on my body forever now, unless I get them removed.
My radiation oncologist wanted me to have 50-70cc's of saline removed from my left breast to not cause any skin damage to that side as the radiation is projected over from my left to right. On Tuesday I had my appointment with my plastic surgeon for the final adjustments before radiation begins.
After going through radiation, I will have skin damage and burns. My skin will no longer stretch if any size adjustments need to be made before I swap my expanders out for implants. All the size changes need to be done now, before radiation. And per my radiation oncologist, NO changes are allowed at this point forward until radiation is done.
At my last appointment a month ago, my plastic surgeon put in 60 cc's on my right side only. I was already uncomfortable being lopsided then. Now? After seeing her on Tuesday? She wanted to make sure my right side was good to go and stretched, so she added another 40 cc's to that side. BUT per my radiation oncologist, she had to remove (aka "deflate") my left side by 50-70cc's. She took out 50 on my left.
Now, my left is 150 cc's smaller than my right. It is a HUGE difference! It is going to be hard to adjust to. I am going to have to figure something out for when I'm wearing a bathing suit! :( Not happy with that. I was already insecure enough without now having VERY lopsided boobs.
After my appointment with the plastic surgeon on Tuesday, I headed back to see Margo and have one more scan. They needed to make sure the changes the plastic surgeon made will have me lined up and good to go when radiation starts. As far as I know, things are good. At least I haven't gotten any calls yet telling me otherwise.
A week from Friday, on the 14th, I head back to radiation. They will do a final set up and have me in the machine for a bit, getting me lined up and all that. They will set the radiation machine to be ready for my treatments. The treatments start on Monday, June 17th.
Before I left on Monday, they printed out my schedule for me. I have every single treatment printed out. Almost all of them are at 1pm. A couple are at 12:45. Then the week I am on vacation down the cape (still need radiation!) Monday, Tuesday and Wednesday my appointments are at 7:45. Thursday they are closed. Friday my appointment is at 7:30. I'll have to leave the Cape, give myself about 90 minutes to get there, where I will be for about 20 minutes or so, then another under 90 minutes to get back to the Cape. But doing that, I should be back at the cottage each day around 9:30am.
It kind of works out a little bit too. I'll need someone to feed the cats for me while I'm gone. If I'm coming home almost every morning, that is 4 other times I won't need anyone to feed them for me. I will just need someone to feed them every night, Sunday-Saturday, then on Thursday and Saturday mornings. I don't know yet who I can ask to do that for me, someone local. I have to ask Jim about it too, before I give a house key out. But then, by stopping at the house to feed them those 4 mornings, I will have to give myself another 45 minutes when I leave the Cape to get to the house, feed them, then the 15-20 minute drive back to Dana Farber.
Jim has needed my car yesterday and today, so I haven't been able to go anywhere. I did get out and take Rocco for a walk yesterday and I'm hoping I have the energy to do it again today.
I still have so much on mind about finishing treatment, where I go from here with my career and any other changes I want to make with my life. Also, I need to think about what I want to do for preventative measures for ovarian cancer as well. I need to start looking up all of that and that scares me.
Next week I am going to an event in Boston with BrightPink.org. It is about women under 40 who are at high risk for breast and ovarian cancers. I started thinking about the BRCA-2 mutation that I have. I can't say for sure what part of my family it came from, but it is somewhere on my dad's side, since my mom was negative for it.
Then I started thinking about the cancer family tree I had to do when I was tested for the BRCA gene. Although none of my dad's cousin's have tested positive for the BRCA mutation, I am fairly positive it came from my grandmother's side.
A cousin who was tested for the gene over 10 years ago (tested negative), did this tree, which is what I used. It goes back 3 generations, which is what I was supposed to do, but 3 generations for her was 4 for me. So my great-great-grandmother, Rose, who died of breast cancer. She was married 3 times, my great-great-grandfather was the third, and my great grandmother was one of her last children. With all of the children she had from each husband she had 11 kids. Two of her daughters had breast cancer. From Rose's grandchildren (outside of my great-grandmother side), she had a grandson with cancer and 3 granddaughters with breast cancer. One was in her 50's, another was 38 when she died. My age. Rose's 3rd husband, my great-great-grandfather, also died of bowel cancer.
Then it's to my great-grandmother, Lucy, who I remember well. My Nana Lucy! I was her oldest great-grandchild, her #1. :) Her husband, Paul, my great-grandfather, had cancer as well, stomach or bowel cancer. They had 7 kids, including my grandmother, Mary. One I'm not sure of, I can't even remember her name. She left the family long before I was born. I don't know if my dad ever met her.
So, with my grandmother and her 5 other brother's and sister's, Paul was killed when he was young, at 9 years old. One of her sisters had breast cancer and 2 of her daughters had breast cancer in their late 40's (although one tested negative for the gene). One brother had bladder cancer. Another brother died of prostate cancer at 47. His daughter died of ovarian cancer at 40. That's 2 years older than me.
My cousin Louise was 2 years older than me. Two! When she died of ovarian cancer, what they call "the silent killer". My the time there are symptoms, it can be too late. She died when she was 2 years older than me.
I remember going to visit Louise when she was sick. I remember going upstairs to her bedroom and visiting with her as she was laying in bed and so tired. I remember he funeral mass as well. I was 14 years old. When we walked into the funeral home, I was sobbing. Her sisters were comforting me. Even at 14, I remember feeling bad about that. They lost a sister and they were comforting me.
I remember that Louise knew it was coming. She made ALL the plans for her funeral, from the music and readings that were done at mass, to the location and food served after the mass. That was Louise, making it easier on everyone else.
During her funeral mass, there is one thing I remember so clearly in the church. I remember looking around and seeing a mailman at the mass, in his uniform. I don't know if he was her mailman or a friend or what, but in my 14 year old mind, I remember thinking, "she was such a great person, even her mailman came to her funeral."
Louise was 2 years older that me when she died. This one thought has been in my head for weeks. I know I need to do something. I want to schedule an appointment with a gynecological oncologist and get the ball rolling on that for my options. I'm scared about it. I don't want to have to go through any cancer again. And if I do nothing, I probably will have to. Next time I might not be so lucky.
So the end is in sight for me with my breast cancer treatment. July 25th is my last day of treatment! YAY! Almost there. Oh one thing I forgot, I have an appointment with my plastic surgeon on July 26th, so she can add more saline to my left side the day after I'm done with radiation so I can be more even as soon as possible!
I'm looking forward to being done with this part soon. I'm hoping the fatigue starts to subside soon (still at 10-12 hours a day of sleep not to mention the HOURS I don't move on the sofa). The side effects have been difficult to manage and its discouraging to not see any changes right now.
But I'll have another beginning with what I do about my ovaries to minimize as much as possible the chance for ovarian cancer. I never want to have to go through this again, so whatever I can do to make that happen, I'll have to do.
Sunday, June 2, 2013
More of a Ride
Even now, even after finishing chemo, I am still on a roller coaster ride. It isn't good days or bad days. Its more about good moments and not so good moments. Yesterday afternoon and last night, not so good.
I just started getting down about things again. And once that spiral starts, it can be really hard to stop it. The thing I hate the most is what this whole thing has done to my self esteem and confidence. SHATTERED it. I am still dealing with the fatigue and haven't lost a pound. I still have a hard time looking in the mirror. I don't like what I see looking back at me.
Being up 20 pounds is so hard. I feel like a fat slob. Toss in being bald and then the 3-4 inch scars across my nipple-less chest. I feel like a freak. I don't like to look at me so how can I expect anyone else to be okay with it. How can Jim? NOT a good road for me to go down.
When Jim left the house yesterday afternoon to pick up some parts for the car he was working on, I had myself a crazy ass pity party that paused for a bit but started up with fully gusto when I tried to go to sleep. SOBBING a few times yesterday. Sobbing.
Jim has been incredible. But this sucks for him. If I can't look at myself in the mirror, how can he possibly be attracted to me? How can he want this? I know he loves me, but sometimes I wonder if he would have been happier and better off if I never moved in and put this on him. Then I feel selfish for putting him through all of this. Because I loved him and wanted this relationship, I moved in with him, but that wasn't fair to him. And I doubt that decision all the time.
I don't want to lose him and I am so happy he is in my life. He is my best friend. I have never been more ME with anyone than I am with him. I'm just an honest, true ME, no holding anything back at all. He is such a great person and I would do anything for him. Even let him go. And I think about it too much. Will we make it through this? Through the rest of my treatment? Will we be okay when radiation is over?
He thinks things will just go back to what they were before October 29th, that I will be back to me before October 29th. That's can't happen. I change. Going through breast cancer, surgery, chemo, all of this... it changed me. And because it changed ME, it changed us and our relationship. Just like I have a new normal, we have a new relationship. And sometimes I wonder if this what he wants. I hate doubting our relationship because of my own insecurities.
Today is National Survivors Day. I'm one of them now, a survivor. A cancer survivor.
Today I took a Stand Up Paddleboarding lesson with a couple of great friends, Christine and Jen. It was so much fun, even though the wind was strong and water was choppy. But I had a blast. Okay so I am absolutely EXHAUSTED but I had a good time. The sun was shining, not a cloud in the sky. Even in the high 80's, the breeze was so nice I never got too hot. It was a great time.
After we stopped for lunch, I headed home and showered. Then I hung out and relaxed for a while. Jim and I went to the late afternoon movie where the have the best reclining seats. It feels like your at home on the sofa, kicking back! We had a nice time and it was fun to hang out and spend time with Jim.
SO, for National Survivors Day, I had a great time. I was out LIVING my life and I spent it with people I love and who I'm so happy that they are in my life.
Today was a good day. I think the highs much more than down times.
I just started getting down about things again. And once that spiral starts, it can be really hard to stop it. The thing I hate the most is what this whole thing has done to my self esteem and confidence. SHATTERED it. I am still dealing with the fatigue and haven't lost a pound. I still have a hard time looking in the mirror. I don't like what I see looking back at me.
Being up 20 pounds is so hard. I feel like a fat slob. Toss in being bald and then the 3-4 inch scars across my nipple-less chest. I feel like a freak. I don't like to look at me so how can I expect anyone else to be okay with it. How can Jim? NOT a good road for me to go down.
When Jim left the house yesterday afternoon to pick up some parts for the car he was working on, I had myself a crazy ass pity party that paused for a bit but started up with fully gusto when I tried to go to sleep. SOBBING a few times yesterday. Sobbing.
Jim has been incredible. But this sucks for him. If I can't look at myself in the mirror, how can he possibly be attracted to me? How can he want this? I know he loves me, but sometimes I wonder if he would have been happier and better off if I never moved in and put this on him. Then I feel selfish for putting him through all of this. Because I loved him and wanted this relationship, I moved in with him, but that wasn't fair to him. And I doubt that decision all the time.
I don't want to lose him and I am so happy he is in my life. He is my best friend. I have never been more ME with anyone than I am with him. I'm just an honest, true ME, no holding anything back at all. He is such a great person and I would do anything for him. Even let him go. And I think about it too much. Will we make it through this? Through the rest of my treatment? Will we be okay when radiation is over?
He thinks things will just go back to what they were before October 29th, that I will be back to me before October 29th. That's can't happen. I change. Going through breast cancer, surgery, chemo, all of this... it changed me. And because it changed ME, it changed us and our relationship. Just like I have a new normal, we have a new relationship. And sometimes I wonder if this what he wants. I hate doubting our relationship because of my own insecurities.
Today is National Survivors Day. I'm one of them now, a survivor. A cancer survivor.
Today I took a Stand Up Paddleboarding lesson with a couple of great friends, Christine and Jen. It was so much fun, even though the wind was strong and water was choppy. But I had a blast. Okay so I am absolutely EXHAUSTED but I had a good time. The sun was shining, not a cloud in the sky. Even in the high 80's, the breeze was so nice I never got too hot. It was a great time.
After we stopped for lunch, I headed home and showered. Then I hung out and relaxed for a while. Jim and I went to the late afternoon movie where the have the best reclining seats. It feels like your at home on the sofa, kicking back! We had a nice time and it was fun to hang out and spend time with Jim.
SO, for National Survivors Day, I had a great time. I was out LIVING my life and I spent it with people I love and who I'm so happy that they are in my life.
Today was a good day. I think the highs much more than down times.
Saturday, June 1, 2013
A Dog? Or a Person?
Today is off to a lazy start. I made myself some french toast for breakfast (which Jim doesn't like) while he was out food shopping. And after 11am, that's about it. I have some laundry going that I need to finish up and nothing much else planned for the day.
Right now I'm just hanging out with the AC's blasting while Jim is on his laptop standing at the kitchen island doing some work.
SO, I figured I could share some fun pictures of Rocco. He kills me! Sometimes I wonder if he wasn't a person in a past life or something. He really does act like a person!
Right now I'm just hanging out with the AC's blasting while Jim is on his laptop standing at the kitchen island doing some work.
SO, I figured I could share some fun pictures of Rocco. He kills me! Sometimes I wonder if he wasn't a person in a past life or something. He really does act like a person!
Okay, so this was in bed this morning and Jim put his head phones on Rocco. Its a little blurry, but doesn't he look like he's just rockin' out!
And I LOVE this one. Jim was adjusting the head phones and I happened to get the pic as Rocco was sticking out his tongue! Ha ha! I have the head phones! LOL!
And Rocco ended up on the sofa with me later this morning. He LOVES to watch TV. How comfy does he look with his head resting on the recliner?
Friday, May 31, 2013
Utah?
A few days ago, a good friend of mine sent me a link to a great site. http://breastcancerfreebies.com/
Well, I love this site! I emailed Bethany from the site to send her information about another link I had come across, so she could add it to her site.
Since then, I've gone through the site for different resources offered. I started looking into grants for help with medical bills, retreats, financial help and other services available. I already got a card in the mail from one! I loved it!
After going through the site, I found a few of the retreats that were interesting and I applied for a couple of them. One is in Utah in August. In one house, 8-10 women under 40, each gets their own bedroom and bath. Other than travel costs, everything else for the weekend is covered.
Here's a paste from their site:
Image Reborn's Living Beyond Breast Cancer retreat program is designed and facilitated by a highly professional staff with backgrounds and experience in addressing the special concerns of women with breast cancer.
The retreats run weekend programs, and are conducted in the beautiful, peaceful mountain setting of Park City, Utah. Approximately ten guests can be accommodated at one time.
The Program includes:
Imagine my surprise when I heard back! They have space and it is on a first come first serve basis, not confirmed until I send them my flight info. OMG!
Last night I was talking to my mom and mentioned it to her. She said she'd help me out with the flight and split it with me, counting it as an early birthday gift! Okay, so this is going to happen now. Hmm... okay. So this is happening. I'm going to a weekend retreat in August to Utah.
I think this will be something good for me, especially since it is shortly after I will finish up radiation. I'm pretty happy about that. I just think it will make a big difference for me, transitioning back into what my life was before cancer.
Overall the neuropathy has been getting a bit better. I can still feel it now and again in my legs but more often in my hands, especially when I'm typing (like right now, when its in my right hand), or when I'm doing something on my phone.
I'm really looking forward to when I won't have this pain anymore. Wednesday night I was in tears. The pain was so intense and it had been over a week already! I had already taken a Vicodin and it hadn't made any difference. I can't even explain how intense the pain gets. SHOOTING AND STABBING right through me. Just cutting right through my leg or foot or arm or finger... fingers SUCK!
But at this point, it has started to subside. I just can't wait for it to be done.
I'm still sleeping 12 hours a day. If I don't get that at night, then I make up for it in naps during the day. My energy level comes in spurts. When I get energy, I want to take advantage of it, but I seem to take it too far and push myself too much (story of my life!) then suffer for it. I'm exhausted and completely wiped out after that.
HOPEFULLY that will get better soon, even though my doctor told me to not expect any changes for months. We'll see.
Next week I see the radiation oncologist (Monday) and then another appointment with my plastic surgeon (Tuesday). It will be a busy and interesting couple of days. I'm a little nervous about it. Radiation, the next leg, will be starting soon. I don't know what to expect. I know it will burn my skin, like a bad sunburn, but I don't know how much damage and scarring to my skin it will do. And that will impact how my reconstruction process goes. One thing after another!
Now that work is straightened out and I know I have a job to go back to, and I had my benefits renewal information done for the next benefit year (July 1- June 30), I took the new costs of my benefits along with Feb on to figure out what I'll owe work. They have been covering not only their share of my insurance premiums, but my share. Radiation will end late July or early August. Based on what I have heard, radiation will cause some intense fatigue that will get worse as radiation continues, even after it is over. That said, it might take a few weeks to start to feel better.
So, that made me think I might not get back until late August. And owing work for insurance premium for about 7 months. Yeah, that is close to $3000! Nice one!
That got me going even more. Adding in the copays I currently owe right now and through Tuesday, plus the copays for any known doctor appointments through the end of the year, my current 3 daily prescriptions (without any others that could be added in), and adding all of that to the $3000 I will owe work.... my medical expenses for June 1st through the end of the year will be approximately $4950. WOW! HOLY CRAP! That's a lot of money!
With everything I've gone through, I've still been thinking about what else I want to do with my life. What do I want to be when I grow up? I want to take this experience and grow from it. I want to take a leap and do something I'm passionate about. But that means I need to get more specific about what I want to do.
I've been thinking more and more about it and trying hard to figure it out. I love doing the fitness thing and teaching exercise classes. I have loved the Couch to 5K for years. I always wanted to take that and merge it with a life coach but I didn't know how. Well, it IS something, a Health and Wellness Coach.
I want to help people realize their wellness goals as well as help them work towards reaching them. Since I have gone through breast cancer, I think I want to add a bit of that into it as well.
For all of this to happen, I need to become a certified health and wellness coach from a nationally accredited program. I want to take nutrition classes as well, plus in addition to being certified now as a group fitness instructor, I want to become a certified personal trainer as well.
All of that takes money. So far, the program I am most interested in costs $6000. Yup. More money.
And that's not including anything to do with my normal, regular, every day bills. So yeah, I need another $11,000 to pay my medical bills for the rest of the year and to get certified to do what I want to do with the rest of my life, what I'm passionate about.
I'm still on the fence about starting a GoFundMe page. But right now, $5000 alone is HUGE just for my medical bills for THIS year, not including the money I have already paid out. And that seems never ending! I'm always paying another bill.
I mentioned it to Jim last night, especially about the $5000 medical bills. He understands how overwhelming that part is, but his words for GoFundMe? "I just hate that." I get it. Just flat out ASKING for money. I could do it when I ran the marathon and was fundraising for Mass Eye and Ear, but that wasn't money for me. This would be for me. So it isn't the same.
But its hard! SO I haven't done it yet. I don't know. Its just so hard to consider, but I think it might be the only way I KNOW I can pay back work for my insurance premium, handle the rest of my medical bills, while I'm paying the rest of my bills. And I could even, maybe, pay for a coaching program. Pros and cons.
So that's about it. That's where I am at. Still having hot flashes and not feeling wonderful that yesterday and today was about 90 degrees. I felt SO sick last night. It was better after Jim put in 2 AC's but even today with the AC on, the house is still over 80 degrees inside. With no energy to begin with? And that hot! Nope, not doing anything!
I'm hoping that its a good weekend, even though it will be hot and I don't have much going on. It will be nice to spend some time with Jim and connect with him too. He's been so busy. But I know he will be busy again all weekend.
SO... happy weekend!
Well, I love this site! I emailed Bethany from the site to send her information about another link I had come across, so she could add it to her site.
Since then, I've gone through the site for different resources offered. I started looking into grants for help with medical bills, retreats, financial help and other services available. I already got a card in the mail from one! I loved it!
After going through the site, I found a few of the retreats that were interesting and I applied for a couple of them. One is in Utah in August. In one house, 8-10 women under 40, each gets their own bedroom and bath. Other than travel costs, everything else for the weekend is covered.
Here's a paste from their site:
Image Reborn's Living Beyond Breast Cancer retreat program is designed and facilitated by a highly professional staff with backgrounds and experience in addressing the special concerns of women with breast cancer.
The retreats run weekend programs, and are conducted in the beautiful, peaceful mountain setting of Park City, Utah. Approximately ten guests can be accommodated at one time.
The Program includes:
- Women's Support Group offering the opportunity for participants to share experiences, kindling courage and understanding, allowing them to rediscover a sense of personal power.
- Education: Opportunity to visit in a small group setting with healthcare professionals regarding available treatment, including conventional and integrative approaches.
- Nutrition: a positive and delicious approach to food.
- Exercise: gentle movement and stretching specifically designed for women with breast cancer.
- Journaling: instruction on how to utilize journaling to enhance life.
- Massage Therapy: light professional massage for relaxation and pampering.
- Rejuvenation Time: private time to allow for rest, contemplation, or whatever each individual desires.
Imagine my surprise when I heard back! They have space and it is on a first come first serve basis, not confirmed until I send them my flight info. OMG!
Last night I was talking to my mom and mentioned it to her. She said she'd help me out with the flight and split it with me, counting it as an early birthday gift! Okay, so this is going to happen now. Hmm... okay. So this is happening. I'm going to a weekend retreat in August to Utah.
I think this will be something good for me, especially since it is shortly after I will finish up radiation. I'm pretty happy about that. I just think it will make a big difference for me, transitioning back into what my life was before cancer.
Overall the neuropathy has been getting a bit better. I can still feel it now and again in my legs but more often in my hands, especially when I'm typing (like right now, when its in my right hand), or when I'm doing something on my phone.
I'm really looking forward to when I won't have this pain anymore. Wednesday night I was in tears. The pain was so intense and it had been over a week already! I had already taken a Vicodin and it hadn't made any difference. I can't even explain how intense the pain gets. SHOOTING AND STABBING right through me. Just cutting right through my leg or foot or arm or finger... fingers SUCK!
But at this point, it has started to subside. I just can't wait for it to be done.
I'm still sleeping 12 hours a day. If I don't get that at night, then I make up for it in naps during the day. My energy level comes in spurts. When I get energy, I want to take advantage of it, but I seem to take it too far and push myself too much (story of my life!) then suffer for it. I'm exhausted and completely wiped out after that.
HOPEFULLY that will get better soon, even though my doctor told me to not expect any changes for months. We'll see.
Next week I see the radiation oncologist (Monday) and then another appointment with my plastic surgeon (Tuesday). It will be a busy and interesting couple of days. I'm a little nervous about it. Radiation, the next leg, will be starting soon. I don't know what to expect. I know it will burn my skin, like a bad sunburn, but I don't know how much damage and scarring to my skin it will do. And that will impact how my reconstruction process goes. One thing after another!
Now that work is straightened out and I know I have a job to go back to, and I had my benefits renewal information done for the next benefit year (July 1- June 30), I took the new costs of my benefits along with Feb on to figure out what I'll owe work. They have been covering not only their share of my insurance premiums, but my share. Radiation will end late July or early August. Based on what I have heard, radiation will cause some intense fatigue that will get worse as radiation continues, even after it is over. That said, it might take a few weeks to start to feel better.
So, that made me think I might not get back until late August. And owing work for insurance premium for about 7 months. Yeah, that is close to $3000! Nice one!
That got me going even more. Adding in the copays I currently owe right now and through Tuesday, plus the copays for any known doctor appointments through the end of the year, my current 3 daily prescriptions (without any others that could be added in), and adding all of that to the $3000 I will owe work.... my medical expenses for June 1st through the end of the year will be approximately $4950. WOW! HOLY CRAP! That's a lot of money!
With everything I've gone through, I've still been thinking about what else I want to do with my life. What do I want to be when I grow up? I want to take this experience and grow from it. I want to take a leap and do something I'm passionate about. But that means I need to get more specific about what I want to do.
I've been thinking more and more about it and trying hard to figure it out. I love doing the fitness thing and teaching exercise classes. I have loved the Couch to 5K for years. I always wanted to take that and merge it with a life coach but I didn't know how. Well, it IS something, a Health and Wellness Coach.
I want to help people realize their wellness goals as well as help them work towards reaching them. Since I have gone through breast cancer, I think I want to add a bit of that into it as well.
For all of this to happen, I need to become a certified health and wellness coach from a nationally accredited program. I want to take nutrition classes as well, plus in addition to being certified now as a group fitness instructor, I want to become a certified personal trainer as well.
All of that takes money. So far, the program I am most interested in costs $6000. Yup. More money.
And that's not including anything to do with my normal, regular, every day bills. So yeah, I need another $11,000 to pay my medical bills for the rest of the year and to get certified to do what I want to do with the rest of my life, what I'm passionate about.
I'm still on the fence about starting a GoFundMe page. But right now, $5000 alone is HUGE just for my medical bills for THIS year, not including the money I have already paid out. And that seems never ending! I'm always paying another bill.
I mentioned it to Jim last night, especially about the $5000 medical bills. He understands how overwhelming that part is, but his words for GoFundMe? "I just hate that." I get it. Just flat out ASKING for money. I could do it when I ran the marathon and was fundraising for Mass Eye and Ear, but that wasn't money for me. This would be for me. So it isn't the same.
But its hard! SO I haven't done it yet. I don't know. Its just so hard to consider, but I think it might be the only way I KNOW I can pay back work for my insurance premium, handle the rest of my medical bills, while I'm paying the rest of my bills. And I could even, maybe, pay for a coaching program. Pros and cons.
So that's about it. That's where I am at. Still having hot flashes and not feeling wonderful that yesterday and today was about 90 degrees. I felt SO sick last night. It was better after Jim put in 2 AC's but even today with the AC on, the house is still over 80 degrees inside. With no energy to begin with? And that hot! Nope, not doing anything!
I'm hoping that its a good weekend, even though it will be hot and I don't have much going on. It will be nice to spend some time with Jim and connect with him too. He's been so busy. But I know he will be busy again all weekend.
SO... happy weekend!
Tuesday, May 28, 2013
Over One Thousand Likes, Animals in the Attic & Lopsided Boobs
Last night I had a really hard time falling asleep. Jim had worked on his car yesterday to change a few things I know that I know nothing about (so why even try to write it!). The front passenger wheel is up on a jack with the tire in the back. He was afraid someone would steel the jacks or something, so he wanted to sleep on the sofa in the living room so he could hear out the window if something was going on.
Without him next to me in bed at night, I have a really hard time falling asleep! So I pulled out my phone for a while and went through some emails and checked facebook.
While I was scrolling through facebook, I started reading a story on the "Breast Cancer Awareness" facebook page. https://www.facebook.com/BreastCancerAwareness If you look it up, it was posted yesterday, Monday, May 27th at 10pm.
After I started reading it, I thought, "hey, this sounds familiar." I scrolled a little further down on facebook and then I saw my picture.
OH yeah! I wrote on the "My Story" section on TheBreastCancerSite.com. So I clicked on that for the full story I wrote. http://www.thebreastcancersite.com/clickToGive/bcs/story/new-normal168?origin=BCS_FACE_BCAWARE_ADGROUP_STORY_NewNormal_052713_CTG
Just weird to see my face and my words on that page.
Then I went back to the BreastCancerAwareness Facebook page. I started reading the comments that people from all over wrote after reading my story. WOW! Talk about support!
This morning I went back on to their page. As of right now 20 people (including me!) shared this story on their facebook pages. 63 people have left comments after reading it. And right now... 1,199 people have "liked" it. WOW. Just blows me away.
My only hope is that some day, some how, some way.. MAYBE what I have gone through will give another woman who has to go through this a little tiny bit of help on her own journey. Maybe she won't feel so alone. Maybe something I say will help her. Maybe. Maybe I won't be going through this just so I have to go through this. Maybe something greater will come out of it. Maybe.
So, like I said, I was having a really really hard time falling asleep last night. At one point, Jim could hear me tossing around from the living room! He asked if I was okay. I told him I was WIDE awake and hadn't fallen asleep at all... this was close to 1:30am. Wonderful.
I got up to go to the bathroom, using the softer fan light in there. After I came out, and about when I was in front of the refrigerator, I heard something. Sounded like small animals running around. My cats are on the first floor of the house. This was coming from ABOVE me. Um, that would be the attic!
At first I thought I was crazy and hearing things, but no. Jim heard it too. And by small animals, I don't mean mice, I mean around the same size of my cats who are 13 & 17 pounds! Like raccoons or something in that awake at 1:30am, give or take 15 pounds size. JOY! AND I WAS HAVING TROUBLE FALLING ASLEEP BEFORE?????
The sound quickly stopped. I got the broom out and not sure what I thought it would do, but I starting banging the end on the ceiling, moving from room to room between all the rooms that are under the attic... kitchen, living room, bedroom and hallway. Nothing. No other sounds. Yup, wide awake.
I put on my flip flops and told Jim that even if he thought it was stupid, I need to go down and check on the cats. If something that big was in the attic, it was IN the house. Just because the cats were 2 floors down didn't mean anything to me. I needed to make sure they were safe.
When I got down there, they were all happy to see me and just wanted to play. After a few minutes of hanging with them (again, 1:30am!), I headed back upstairs. Still, no other attic sounds. But I was FREAKED OUT!
The wonderful closet that Jim built me... guess what's in there? The door to the friggin attic! And guess what is over the door? Two over the door clothes hooks. With one being HUGE and thick, it was impossible to close that door tightly. Nice, huh? Animals loose, running around the attic and the damn door is open from my friggin clothes hooks!
Right now, the big think one is on the bedroom door, dressing basically blocking the entry into the bedroom. A shelf I have in my closet now has the smaller hook sticking into the top shelf, with fleece type jackets blocking any movement in that closet it sticks out so far.
BUT THE ATTIC DOOR IS CLOSED TIGHT AND LOCKED!!
After we both went to bed again, me in bed and Jim on the sofa, my whole body was tense. Any sound at all, even distant traffic (and we live in a city!) would have my ears perk up a little bit more. Jim told me to just relax and go to sleep. HA HA HA! Easier said than done!
I was up in the attic yesterday too! I was looking for something in one of the little plastic bins that I have up there and I moved my old AC unit closer to the top of the stairs so its easier for Jim to get it down in the next day or 2 (going to hit 90 for a few days starting on Thursday. I NEED those AC's down and in the windows by then if I'm home all day!)
What is whatever was up there, was there when I was? What if it was just sleeping in a corner or something???? OMG! I would have screamed like a little girl! About a year ago, when I was getting a spoon out of the drawer in the morning for cereal and a 2 or 3 inch mouse crawled out along the edge of the drawer? HOLY SHIT! I jumped backwards, dropped the spoon, and SCREAMED! More like a crazy high pitched terrified screech! That was a 2-3 inch tiny mouse! If I saw something bigger in the attic? OH MY GOD! HELL NO!
So yeah, I'm freaked out still. NOT going back up in the attic alone EVER. I've been up there at night too! URGH! WTF!
So that was my night last night. Somehow I managed to fall asleep after all that and got up around 8:30 this morning. Jim has been working from home all morning, and then he'll put the tire back on his car and do all the work on the drivers side front wheel that needs to be done, so he can get his car re-inspected.
His car failed inspection in April. He had 60 days to get the work done and bring it back to be in-inspected. Basically, by Saturday. The dealership quoted him close to $3500 in work to have it pass. He said I don't think so and spent under $700 on the parts and tools he needed to do the work. Of course, he waited until this weekend to start it all! But all he has left is putting the passenger front tire back on, then doing all the work on the drivers side front tire (bushings? maybe?? something like that anyway!)
I'm hoping before he goes to work, he'll ease my mind by taking a walk up into the attic and making sure nothing is up there! Still make me shudder thinking if it came down while I was sleeping across the hall from my closet with the attic door!!
I was popping Vicodin all weekend with the neuropathy pain more intense than it has ever been. Shooting through my legs and hands. NOT fun. Plus I was just SO tired. This fatigue is NUTS!
I did find a tiny burst of energy yesterday and took Rocco for another 30 minute walk in the cemetery across the street. We have a nice little loop that we do, then we head out the other side and walk around the block, outside of the cemetery to get back home. He's getting better with me on the leash and for walks with each one. My goal is to try to do 3-4 walks with him each week. I'd love to do one every day, but I'm trying to be more realistic. I know that won't happen. I know some days I just won't have the energy. But I love it when I ask him if he wants to go for a walk and he runs over to the front closet doorknob where his leash is hanging. He gets SO excited for it!
Lately, he's been SO good walking with me. No more pulling on the leash at all. Even when we see a squirrel, all I have to do is give a little dug on the leash and say "come on" and he'll start walking with me again. Its nice to have him with me like that. He's such a good boy!
This week, I don't have too much going on. Today I don't have any appointments. IF I have any energy tonight, I might go to a fitness class for people going through cancer treatments. But, the guy isn't exactly local. Depending on traffic, it could take me close to 45 minutes to get there. But, its a free class and I really do want to meet the people there. Wednesday, Thursday and Friday, the only appointments that I have are for physical therapy for my arm... range of motion and lymphedema issues.
Next week on Monday I will see the radiation oncologist. I should find out more then about when exactly I'll be starting radiation. I hope I don't need to get tattoos but I'm prepping myself for it. They tattoo people for radiation treatment. Since each treatment is pretty quick, faster than it will take to undress and then dress again, all they have to do is line up the machine for the exact locations that the radiation needs to go. By putting small tattoo dots on those areas, they can quickly and more easily line up the machine for each treatment
I just don't want that reminder to stay with me forever. I don't want that on my body forever. We'll see. But like I said, prepping myself that it will be happening on Monday.
Tuesday I'll see the plastic surgeon again. She'll make any adjustments to my expanders then to be more ready for radiation. I have a feeling she will fill my right side again, so get it even more expanded before radiation starts. She wants the skin to expand now as much as possible. After I go through radiation, the treatment may leave some of my skin damaged, making reconstruction more difficult. The skin won't be as elastic as before.
She wants to expand it now, prepping for the damage that might come. Six months after radiation is done (and damage has settled) she'll swap out the expanders for implants. If I'm over extended now, bigger than I ultimately want to end up, she'll have more room and skin available to deal with any damaged skin I might have.
I have a feeling I'll be "inflated" this time on my right side. Then I think I'll have one more appointment, right before radiation starts. She'll "deflate" at least my left side at that point, depending on what the radiation oncologist tells me (again, why I think I'll have tattoos done on Monday). The plastic surgeon will need to know where specifically I'll be getting radiation and the lines that will be used to get there. Will my left boob be in the way? Is it too big now to have the radiation pass over it to where it needs to hit on my right? If so, the left will need to be "deflated" so the radiation can pass over where it needs to go to get to my right side. Wonderful.
Just in time for summer and bathing suit season, I finally have bigger boobs and they will be insanely lopsided! I do understand no one is symmetric from one side to the other. But at my last appointment she already added 60 cc's of saline into JUST my right side. They are already uneven. If she's going to add MORE to right and take out some from my left? HELLO
I guess from looking right at me, unless you're looking for it (at least what Jim says but I know he really would be honest with me.. TOO honest!), they don't look uneven. But for me? Well, I'm sitting on the recliner in the living room right now. Wearing a tank top and bra, looking straight down with my phone pretty much where my eyes would be looking down, they are uneven. Right is bigger. I guess, 60 cc's bigger! So... here's a picture of looking down at the girls.
.JPG)
Now remember... I am LAYING down. ie. NO GRAVITY applies anymore for me, they stand up at attention even when I'm laying down, on the recliner, under a blanket.
And when I look down, this is what I see, the right side is bigger. 60 cc's bigger! And I can feel the difference too. There is more room in the expander on the left side. Squishier I guess. The right is more firm and has less give.
Anyway.. here's to everyone having a good short week and the last few days of May!
Without him next to me in bed at night, I have a really hard time falling asleep! So I pulled out my phone for a while and went through some emails and checked facebook.
While I was scrolling through facebook, I started reading a story on the "Breast Cancer Awareness" facebook page. https://www.facebook.com/BreastCancerAwareness If you look it up, it was posted yesterday, Monday, May 27th at 10pm.
After I started reading it, I thought, "hey, this sounds familiar." I scrolled a little further down on facebook and then I saw my picture.
OH yeah! I wrote on the "My Story" section on TheBreastCancerSite.com. So I clicked on that for the full story I wrote. http://www.thebreastcancersite.com/clickToGive/bcs/story/new-normal168?origin=BCS_FACE_BCAWARE_ADGROUP_STORY_NewNormal_052713_CTG
Just weird to see my face and my words on that page.
Then I went back to the BreastCancerAwareness Facebook page. I started reading the comments that people from all over wrote after reading my story. WOW! Talk about support!
This morning I went back on to their page. As of right now 20 people (including me!) shared this story on their facebook pages. 63 people have left comments after reading it. And right now... 1,199 people have "liked" it. WOW. Just blows me away.
My only hope is that some day, some how, some way.. MAYBE what I have gone through will give another woman who has to go through this a little tiny bit of help on her own journey. Maybe she won't feel so alone. Maybe something I say will help her. Maybe. Maybe I won't be going through this just so I have to go through this. Maybe something greater will come out of it. Maybe.
So, like I said, I was having a really really hard time falling asleep last night. At one point, Jim could hear me tossing around from the living room! He asked if I was okay. I told him I was WIDE awake and hadn't fallen asleep at all... this was close to 1:30am. Wonderful.
I got up to go to the bathroom, using the softer fan light in there. After I came out, and about when I was in front of the refrigerator, I heard something. Sounded like small animals running around. My cats are on the first floor of the house. This was coming from ABOVE me. Um, that would be the attic!
At first I thought I was crazy and hearing things, but no. Jim heard it too. And by small animals, I don't mean mice, I mean around the same size of my cats who are 13 & 17 pounds! Like raccoons or something in that awake at 1:30am, give or take 15 pounds size. JOY! AND I WAS HAVING TROUBLE FALLING ASLEEP BEFORE?????
The sound quickly stopped. I got the broom out and not sure what I thought it would do, but I starting banging the end on the ceiling, moving from room to room between all the rooms that are under the attic... kitchen, living room, bedroom and hallway. Nothing. No other sounds. Yup, wide awake.
I put on my flip flops and told Jim that even if he thought it was stupid, I need to go down and check on the cats. If something that big was in the attic, it was IN the house. Just because the cats were 2 floors down didn't mean anything to me. I needed to make sure they were safe.
When I got down there, they were all happy to see me and just wanted to play. After a few minutes of hanging with them (again, 1:30am!), I headed back upstairs. Still, no other attic sounds. But I was FREAKED OUT!
The wonderful closet that Jim built me... guess what's in there? The door to the friggin attic! And guess what is over the door? Two over the door clothes hooks. With one being HUGE and thick, it was impossible to close that door tightly. Nice, huh? Animals loose, running around the attic and the damn door is open from my friggin clothes hooks!
Right now, the big think one is on the bedroom door, dressing basically blocking the entry into the bedroom. A shelf I have in my closet now has the smaller hook sticking into the top shelf, with fleece type jackets blocking any movement in that closet it sticks out so far.
BUT THE ATTIC DOOR IS CLOSED TIGHT AND LOCKED!!
After we both went to bed again, me in bed and Jim on the sofa, my whole body was tense. Any sound at all, even distant traffic (and we live in a city!) would have my ears perk up a little bit more. Jim told me to just relax and go to sleep. HA HA HA! Easier said than done!
I was up in the attic yesterday too! I was looking for something in one of the little plastic bins that I have up there and I moved my old AC unit closer to the top of the stairs so its easier for Jim to get it down in the next day or 2 (going to hit 90 for a few days starting on Thursday. I NEED those AC's down and in the windows by then if I'm home all day!)
What is whatever was up there, was there when I was? What if it was just sleeping in a corner or something???? OMG! I would have screamed like a little girl! About a year ago, when I was getting a spoon out of the drawer in the morning for cereal and a 2 or 3 inch mouse crawled out along the edge of the drawer? HOLY SHIT! I jumped backwards, dropped the spoon, and SCREAMED! More like a crazy high pitched terrified screech! That was a 2-3 inch tiny mouse! If I saw something bigger in the attic? OH MY GOD! HELL NO!
So yeah, I'm freaked out still. NOT going back up in the attic alone EVER. I've been up there at night too! URGH! WTF!
So that was my night last night. Somehow I managed to fall asleep after all that and got up around 8:30 this morning. Jim has been working from home all morning, and then he'll put the tire back on his car and do all the work on the drivers side front wheel that needs to be done, so he can get his car re-inspected.
His car failed inspection in April. He had 60 days to get the work done and bring it back to be in-inspected. Basically, by Saturday. The dealership quoted him close to $3500 in work to have it pass. He said I don't think so and spent under $700 on the parts and tools he needed to do the work. Of course, he waited until this weekend to start it all! But all he has left is putting the passenger front tire back on, then doing all the work on the drivers side front tire (bushings? maybe?? something like that anyway!)
I'm hoping before he goes to work, he'll ease my mind by taking a walk up into the attic and making sure nothing is up there! Still make me shudder thinking if it came down while I was sleeping across the hall from my closet with the attic door!!
I was popping Vicodin all weekend with the neuropathy pain more intense than it has ever been. Shooting through my legs and hands. NOT fun. Plus I was just SO tired. This fatigue is NUTS!
I did find a tiny burst of energy yesterday and took Rocco for another 30 minute walk in the cemetery across the street. We have a nice little loop that we do, then we head out the other side and walk around the block, outside of the cemetery to get back home. He's getting better with me on the leash and for walks with each one. My goal is to try to do 3-4 walks with him each week. I'd love to do one every day, but I'm trying to be more realistic. I know that won't happen. I know some days I just won't have the energy. But I love it when I ask him if he wants to go for a walk and he runs over to the front closet doorknob where his leash is hanging. He gets SO excited for it!
Lately, he's been SO good walking with me. No more pulling on the leash at all. Even when we see a squirrel, all I have to do is give a little dug on the leash and say "come on" and he'll start walking with me again. Its nice to have him with me like that. He's such a good boy!
This week, I don't have too much going on. Today I don't have any appointments. IF I have any energy tonight, I might go to a fitness class for people going through cancer treatments. But, the guy isn't exactly local. Depending on traffic, it could take me close to 45 minutes to get there. But, its a free class and I really do want to meet the people there. Wednesday, Thursday and Friday, the only appointments that I have are for physical therapy for my arm... range of motion and lymphedema issues.
Next week on Monday I will see the radiation oncologist. I should find out more then about when exactly I'll be starting radiation. I hope I don't need to get tattoos but I'm prepping myself for it. They tattoo people for radiation treatment. Since each treatment is pretty quick, faster than it will take to undress and then dress again, all they have to do is line up the machine for the exact locations that the radiation needs to go. By putting small tattoo dots on those areas, they can quickly and more easily line up the machine for each treatment
I just don't want that reminder to stay with me forever. I don't want that on my body forever. We'll see. But like I said, prepping myself that it will be happening on Monday.
Tuesday I'll see the plastic surgeon again. She'll make any adjustments to my expanders then to be more ready for radiation. I have a feeling she will fill my right side again, so get it even more expanded before radiation starts. She wants the skin to expand now as much as possible. After I go through radiation, the treatment may leave some of my skin damaged, making reconstruction more difficult. The skin won't be as elastic as before.
She wants to expand it now, prepping for the damage that might come. Six months after radiation is done (and damage has settled) she'll swap out the expanders for implants. If I'm over extended now, bigger than I ultimately want to end up, she'll have more room and skin available to deal with any damaged skin I might have.
I have a feeling I'll be "inflated" this time on my right side. Then I think I'll have one more appointment, right before radiation starts. She'll "deflate" at least my left side at that point, depending on what the radiation oncologist tells me (again, why I think I'll have tattoos done on Monday). The plastic surgeon will need to know where specifically I'll be getting radiation and the lines that will be used to get there. Will my left boob be in the way? Is it too big now to have the radiation pass over it to where it needs to hit on my right? If so, the left will need to be "deflated" so the radiation can pass over where it needs to go to get to my right side. Wonderful.
Just in time for summer and bathing suit season, I finally have bigger boobs and they will be insanely lopsided! I do understand no one is symmetric from one side to the other. But at my last appointment she already added 60 cc's of saline into JUST my right side. They are already uneven. If she's going to add MORE to right and take out some from my left? HELLO
I guess from looking right at me, unless you're looking for it (at least what Jim says but I know he really would be honest with me.. TOO honest!), they don't look uneven. But for me? Well, I'm sitting on the recliner in the living room right now. Wearing a tank top and bra, looking straight down with my phone pretty much where my eyes would be looking down, they are uneven. Right is bigger. I guess, 60 cc's bigger! So... here's a picture of looking down at the girls.
.JPG)
Now remember... I am LAYING down. ie. NO GRAVITY applies anymore for me, they stand up at attention even when I'm laying down, on the recliner, under a blanket.
And when I look down, this is what I see, the right side is bigger. 60 cc's bigger! And I can feel the difference too. There is more room in the expander on the left side. Squishier I guess. The right is more firm and has less give.
Anyway.. here's to everyone having a good short week and the last few days of May!
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